Chronicling the adventures of one amazing, funny, sweet, outrageous young lady, who happens to have CHARGE syndrome!

Thursday, July 10, 2008

Summer Fun

Kennedy is having fun with Jenna & Marysa here - they go off to the playground themselves or up to the store for an ice cream. Also, on Wednesday nights for the next eight weeks, we'll be having a sleepover with them as I have a photography course so Marysa will watch Kennedy & Jenna while I'm out, then the three of them will have a sleepover. Kennedy is pretty excited about that.

Not too much other than that is new around here - Kennedy made out great at Nana & Papa's while I was on my trip to Europe, next week is the beginning of her two-week "Disney on Stage" theatre camp so we'll be busy this weekend getting ready for that. Hope everyone is having a fabulous summer!

WELCOME!

Today is...

Team Kennedy CIFC

What is CHARGE Syndrome?

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.

Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.

One of the hidden features of CHARGE syndrome is the determination and strong character these children display.